Perceived Susceptibility of Persons with Physical Disability to Factors Contributing to the Risk of Contracting HIV in Cameroon: A Qualitative Study
Elvis E. Tarkang1, *, Prosper M. Lutala2
1Department of Population and Behavioural Science, School of Public Health, University of Health and Allied Sciences, Volta Region, Ghana
2School of Public Health and Family Medicine, University of Malawi, Blantyre, Malawi
To cite this article:
Elvis E. Tarkang, Prosper M. Lutala. Perceived Susceptibility of Persons with Physical Disability to Factors Contributing to the Risk of Contracting HIV in Cameroon: A Qualitative Study. International Journal of HIV/AIDS Prevention, Education and Behavioural Science. Vol. 1, No. 1, 2015, pp. 1-7. doi: 10.11648/j.ijhpebs.20150101.11
Abstract: Persons with disabilities (PWDs) constitute about 15% of the world population and 5% of Cameroon population. Persons with physical disability have been identified as one of the vulnerable groups to HIV due to several challenges posed by their disability. They represent one of the largest and most underserved population, have an unmet needs for health including HIV services, and have historically been excluded from HIV planning and programming largely due to perceptions that they are not at risk. Further, there is scarcity of literature on HIV/AIDS relating to PWDs. Therefore, this study is aimed at investigating the perception of risk of contracting HIV among persons with physical disability in Cameroon. A qualitative study was conducted among ten persons with physical disability aged 18 years and above, selected purposively in Kumba (South West region of Cameroon), using in-depth interviews to collect data in April 2015. The participants perceived that persons with physical disability in Cameroon are at high risk of contracting HIV, because of poverty, sexual risk behaviours, low literacy levels and low likelihood or lack of marriage (singlehood). Policy-makers should provide subsidies for commodities with respect to persons with disabilities, empower them economically, and implement tight legislation against gender-based violence and rape towards people with disabilities. Special programmes targeting HIV prevention and treatment amongst this group is of utmost importance. Collaboration with the Cameroon Ministries of Social Affairs to better address their neglected social and economic needs is compelling.
Keywords: Cameroon, Educational Level, HIV/AIDS, Perception of Risk, Persons with Physical Disability, Poverty
Reports on disability show that around 15% of the world population lives with a disability and 80% of persons with disabilities (PWDs) live in developing countries [1,2]. Persons with disabilities experience negative attitudes that can result in violence, sexual abuse, stigma and discrimination, which can lead to low self-esteem and social isolation. They represent one of the largest and most underserved populations, and have unmet needs for health and HIV services in order to protect themselves. Persons with disabilities experience all of the risk factors associated with contracting HIV:
1. They are often at an increased risk because of poverty
2. They have severely limited access to education and health care, and a lack of information and resources to facilitate safe sex.
3. Often, they lack legal protection and are vulnerable to substance abuse and stigma.
4. They may also experience compounded negative consequences such as low self-esteem 
Persons with physical disability have been identified as one of the groups vulnerable to HIV due to several challenges posed by their disability. They suffer internal stigma which is self-inflicted due to low self-esteem. They also suffer external stigma from their able-bodied peers. However, they have largely been ignored as part of HIV prevention programmes, and information is not being accessible. A lack of such information means that they do not receive adequate and life-saving information about the virus, its mode of transmission and prevention, and how to stay uninfected or how to care for others infected with the virus. Therefore, persons with physical disability are likely to have an increased risk for HIV infection, potentially being a key population with regard to this epidemic .
The physically disabled have historically been excluded from HIV planning and programming largely due to perceptions that they are not at risk. In 2004, however, the Global Survey of HIV/AIDS and Disability Report identified considerable risk of exposure to HIV among PWDs . The relevance of HIV for PWDs was articulated in the Disability and HIV Policy Brief jointly released by UNAIDS, the World Health Organization and the Office of the High Commissioner for Human Rights in 2009 . Since then, attention on HIV and disability has been on the rise [5-7]. A growing body of research has explored aspects of HIV risk, vulnerability and prevention among PWDs [8-12].
About 5.4% of the Cameroon population lives with a disability . However, there is scarcity of literature on HIV/AIDS and PWDs in Cameroon. This is mainly because those who have been charged with HIV/AIDS control have not yet considered HIV/AIDS and how it affects people with disabilities. Despite growing recognition of the HIV prevention needs of PWDs, there is a dearth of evidence related to experiences of PWDs in Cameroon . In Cameroon, no official statistics exist on risk of contracting HIV among PWDs, which creates a challenge for understanding the extent of the pandemic in this population. For the fight against HIV/AIDS to succeed, policy makers and organizations must pay due attention to the plight of PWDs.
Recognizing the need for appropriate and reliable data to help protect PWDs from HIV infection and achieve a better inclusion of disability in National AIDS Control Programmes in Cameroon, this study is aimed at investigating the perception of risk contracting HIV among persons with physical disability in Cameroon, in order to generate information on the factors contributing to their risk contracting HIV.
2.1. Site of the Study
Kumba, where this study was conducted, is an urban municipal area in the South West region of Cameroon, with a total population of approximately 166,000 inhabitants . The Republic of Cameroon is divided into 10 regions. The North West and South West regions are predominantly English speaking while the other eight regions are predominantly French speaking. The South West region where this study was conducted has an HIV/AIDS prevalence of 5.7%, which is above the Cameroon national prevalence of 4.3% .
2.2. Study Design and Population
This phenomenological, qualitative study design was conducted among persons with physical disability in Cameroon. Qualitative research embraces the view that as far as peoples’ perceptions are concerned, there is no one single truth. In other words, different people in different places at different times, interpret things differently. It therefore, seeks to find answers to questions about the meaning and individual interpretation of life. It is used to answer open questions relating to peoples' attitudes and beliefs, in a given contextual setting.
Qualitative research is aimed at describing social phenomena and behaviours using rich contextual data that emphasise the subjective experiences of social actors. The value of qualitative perspective has gained favour in social and behavioural health research, and in HIV/AIDS research in particular, where many of the social phenomena being studied are personal, intensively private and sometimes illicit . As described in the introduction, research on HIV/AIDS relating to PWDs in Cameron is scanty, therefore qualitative design is appropriate and effective when little or nothing is known about the situation, as they do not require a predictive statement and therefore seek the answers to open questions [18,19]. Qualitative methods are also an effective tool when the target group are vulnerable, as is inevitably so, when focusing on PWDs. As the aim of the study was to explore the meaning participants gave to their susceptibility to HIV, phenomenological design was the most appropriate qualitative design. The main objective of phenomenology is to reconstruct the formal structures of the life-world. The general aim of life-world analysis is therefore to analyse the understanding of meaning-comprehension by means of a formal description of invariable basic structures of the constitution of meaning in the subjective consciousness of actors .
2.3. Selection of Participants and Data Collection
In this study we examined the views of persons with physical disability, in their natural settings to assess the perceptions of their susceptibility to HIV infection . Participants for in-depth interviews were selected purposively through the Associations for persons with disabilities, resulting in a snowball sampling effect, resulting in 10 (5 male and 5 female) persons with physical disability for face-to-face semi-structured in-depth interviews. This technique is often used when the researcher has specific requirements for the sample and picks a subject who meets these strict criteria . To qualify for the study, participants had to be at least 18 years old and having physical disability.
In-depth interviews provide a flexible tool for collecting narrative data describing interviewees’ perspectives. Interviews were conducted with the aid of an interview checklist and included probes for further questioning , covering questions on key factors that influence susceptibility to HIV infection. Past studies informed the development of the topic guide for the semi-structured in-depth interviews . The topic guide was then reviewed for content validity by the first author, who is a specialist in HIV research. The interviews were conducted and audio-taped in Kumba by the first author, and sessions lasted about thirty minutes, and the audio-recordings were transcribed verbatim. Data were considered saturated when no more new information were obtained .
2.4. Analysis and Validity of Data
Data were organized and coded using a thematic analysis . Quotes were edited for ease of reading but were not substantially altered. The quotations cited in this paper best represent the range of experiences and perceptions voiced around key themes. A theme was then defined as a "common thread that runs through the data" . To maintain anonymity, these quotes are identified by gender and age. The transcripts were then reviewed to confirm the findings until saturation was reached, and quotes that best illustrate common theme, identified . To assure quality of the data, the checklist was piloted with two physically disabled persons. Subsequently, some modifications were incorporated in the research instrument. To ensure accuracy, the transcriptions were crosschecked for inter-rater reliability by the first author who is a specialist in HIV .
2.5. Ethical Considerations
Permission to conduct the current research was obtained from research and ethics committee of the HIV/AIDS Prevention Research Network, Cameroon (HIVPREC) and from the Ministry of Social Affairs, Cameroon.
Participants were given verbal and written information about the study and signed an informed consent form before being interviewed. No personal information or identifier was retained within transcripts. All interviewees participated on a voluntary basis and no financial incentives were provided. Ethical clearance for this study was obtained from the research and ethics committee of the faculty of philosophy, religious and social studies of the Cameroon Christian University (CCU).
All the study reports that were accessed by the researchers have one commonality: "persons with physical disability are at high risk of contracting HIV."
This perceived high risk of contracting HIV among persons with physical disability is mostly because they are usually inflicted with poverty, discrimination and are generally stigmatised by the general public. They face many socio-economic problems that further exacerbate their plight. Their conditions, their unmet sexual needs due to their ‘forced-abstinence’ by lack of potential sexual partners, and the hidden agenda of some ‘helpers’ who abuse disabled people beyond sporadic gifts, also put them in a vulnerable position.
One participant had this to say:
"Persons with physical disability are highly exposed to HIV infection because of their disabled conditions. They feel desperate and being desperate, when any man approaches them for friendship and sexual intercourse they will always accept" (female; 31 years).
Beyond self-control, a person with physical disability is ready to offer sex to anybody and alleviate his/her self-containment, according to the following participant:
"Persons with physical disability, especially women, are at high risk of contracting HIV because they are sexually desperate. When a physically disabled person stays for a long time without having sex, he/she becomes very excited to the extent that anybody that approaches him/her for sexual intercourse, they will just accept, not knowing the person’s HIV status" (male; 45 years).
Sometimes, persons with physical disability regard request for sex as rare opportunity to respond to, not bearing in mind the possible risk of contracting HIV in the process, according to the following participant:
"Since physically disabled persons do not have the opportunity to move around because of their conditions, they are already experiencing low self-esteem. So if anybody approaches them for intercourse, they will find it difficult to turn down the request for fear that they might not get another person so soon, since they are anxious to satisfy their sexual desires. This situation can put them at high risk of contracting HIV" (female; 35 years).
Social needs expose persons with physical disability to accept gifts from anybody; however, some people can use the gifts just to have sex with them and satisfy their sexual desires, according to the following participant:
"There are some categories of men who are so desperate and lack respect. They can have sex with any woman they come across. They come with the pretext that they want to assist the woman with physical disability, and after they have had sex with her, they abandon her. They will use flattering words to convince her and she will easily give in. This might expose her to HIV infection" (male; 41 years).
Many factors that contribute to the high risk of contracting HIV were identified and grouped into the following themes:
• Low literacy levels
• Sexual risk behaviours
• Marital status
Persons with physical disability in this study pointed out that most physically disabled persons in Cameroon are poverty stricken due to unemployment. Many of them are unemployed because of lack of employable skills due to the absence of either formal education at all or very low levels of education. The low level of education stems from discrimination from the family, where parents do not give the physically disabled the same opportunity like the able bodied children. This scenario continues even to community level. When persons with physical disability go to seek for employment, they are not given the opportunity. The high level of poverty makes the physically disabled, especially the women very vulnerable to sexual manipulation in order to earn a living, which might expose them to HIV transmission.
The poverty situation in the family also has a negative implication on the livelihood of a child with physical disability. Young people with physical disability (in particular, girls) who are born in very poor families are more vulnerable and some have been lured into sexual encounters in the name of satisfying their material needs. Poverty has complicated access to information in that most persons with physical disability cannot even afford radios and televisions let alone newspapers where most information on HIV/AIDS is disseminated.
As already mentioned, persons with physical disability are among the chronically poor groups of the population. The high levels of poverty predispose them to HIV/AIDS in that women have to engage in sexual activities with multiple sexual partners in anticipation of financial and other forms of support.
The physically disabled are therefore highly exposed to HIV because of poverty, according to the following participants:
"Poverty is rife among persons with physical disability. Poor physically disabled persons will find it very difficult to turn down a sexual request from anybody who promises to assist them financially. Most persons with physical disability have become victims of this kind of situation because of poverty, and statistics have shown that the physically disabled are the ones who suffer from poverty the most. So when such a situation arises, they may not want to lose the opportunity, which comes up rarely. This situation may expose them to HIV infection" (Male; 45 years).
"Those who are physically disabled cannot do anything to earn some money. Parents have to provide for them throughout their life and most parents are also poor. So they are left with no option than to accept sex with any man that promises to take care of their needs, and this might increase their risk of contracting HIV" (female; 41 years).
"Widows entice physically disabled men, who engage in sex in exchange for money and other forms of material support, because they feel we are not promiscuous" (male; 37 years).
"Many women with physical disability are in constant need for food, money and other necessities but don’t have anybody to provide for them. They, therefore, resort to men who provide them with these basics in exchange for sex" (female; 46 years).
"We want good things like all young girls but even our parents don’t provide them because we are disabled. We have to find alternatives and these are mainly men who give us some little money and we buy what we want" (female; 26 years).
3.2. Low Literacy Levels
Many persons with physical disability are unable to read and write. This means that they are not able to access the abundant literature on various aspects of HIV/AIDS, including reproductive health and other critical areas of development, (which, unfortunately is in English). This increases their vulnerability to HIV infection.
It was mentioned in this study that the physically disabled and particularly women are generally not educated. Some participants attributed this to parental attitudes against disabled children while other participants felt that the unfriendly nature of the Cameroon school system together with negative attitudes contributes to the physically disabled’s failure to attain formal education. This was highlighted by a number of participants:
"Many parents prefer to educate the physically abled children than to educate a disabled child. So many of us are not educated, and as a consequence, we don’t have access to sexuality education materials which are written in English, and as such we are at high risk of HIV infection because of ignorance" (male; 33 years)
"Our parents feel we cannot perform well in school because we are disabled; they therefore, always say that they don’t have money to waste on us" (Female; 26 years).
"Most of us are not educated because we are physically disabled. Many parents feel that educating a disabled child is a waste of resources. This situation puts us at a disadvantaged position with regard to HIV transmission" (female; 35 years).
"Many parents prefer to sponsor children who are not physically disabled than to sponsor the disabled. Such parents are ignorant or wicked. Most persons with physical disability, especially those in the rural areas and those from poor parents have accessibility problems going to school. The free education the Cameroon government is offering is incomplete because apart from school fee waiver, the government does not provide free uniforms and books, so many of us can’t go to school" (Male; 45 years)
3.3. Marital Status
Failure to get sexual/marriage partners was also mentioned among the male and female participants, according to the following excerpts:
"It is very difficult for a physically disabled person, especially a woman to get married because men always believe that such a woman cannot assist in the house because of her physical disability. So because of permanent singlehood, she will be exposed to multiple sexual partners, and as a consequence of this, to HIV infection. Men should be encouraged to get married to physically disabled women, and not only to use them to satisfy their sexual desires and then dump them" (male; 45 years)
"It is hard for us to find faithful or permanent life partners because we are disabled and men think we are not like able-bodied women" (female; 26 years).
"Beautiful girls despise us and think we are not worth being taken as serious and capable partners" (male; 37 years).
"Physical disability can cause us to remain single. Men feel shy associating with a physically disabled woman exclusively. Men feel that when they marry women with physical disabilities, they will be straining too much to cater for their needs, and they will also find it difficult to socialize with us in public. Therefore, men only come to us to satisfy their sexual desires and then abandon us. Such multiple relationships can expose us to HIV infection" (female; 41 years).
3.4. Sexual Risk Behaviours
Many persons with physical disability do not normally have the opportunity to engage in sex because of their general exclusion, but they too are human and sometimes desire sex although potential partners do not normally approach them. When an opportunity arises and the partner shuns condom use, the physically disabled is generally vulnerable and just accepts to engage in sex without a condom.
Some persons with physical disability doubt the effectiveness of a condom. Their knowledge about the use of the condom and its effectiveness is limited. Where some physically disabled could have used condoms, they find them expensive.
Use of condoms by physically disabled persons is not a prevalent practice. Condom use among persons with physical disability is very low and both women and men with disabilities mainly attributed this to lack of confidence to negotiate safe sex, fear and stigma suffered in the process of buying a condom and reluctance of some partners to engage in sex with partners who request condom use.
In general, participants in this study mentioned that persons with physical disability are highly exposed to HIV infection because of sexual risk behaviours (rape, sexual exploitation, unprotected sex and multiple sexual partners), according to the following participants:
"Men often way-lay our friends and rape them since they can neither run nor fight to defend themselves" (Female; 31 years).
"Men only come to us for sex. None of them mentions marriage. They just use us" (Female; 26 years).
"Girls with physical disability offer themselves to men because they think that no man would ever approach them for true love. They lead reckless lives in a bid to have fulfilled sexual lives like their able-bodied counterparts. Condoms are not easily accessible for a physically disabled person because of poverty and lack of mobility aides. So we usually have unprotected sexual intercourse with our partners" (Male; 45 years).
"Young girls with physical disability feel honoured to sleep with a man and they dare not discuss condoms with their partners" (Female; 35 years).
"Some of our girlfriends particularly fellow disabled, don’t like condoms and we fear losing them. We just have to forget about condoms and live with the risk of contracting HIV" (Male, 37 years).
"A physically disabled person may be very shy to ask the sexual partner to use a condom for fear of losing the partner if the partner refuses to use it. This might expose them to the risk of contracting HIV" (Female; 35 years)
"When a disabled person goes to buy a condom, she/he is being laughed at. Condom providers and the entire community think that it is impossible for a physically disabled person to have a sexual partner, we therefore fear to buy condoms" (Male; 41 years).
Participants in this study were of the view that persons with physical disability in Cameroon are at high risk of contracting HIV. They cited poverty, low literacy levels, marital status and sexual risk behaviours as the main factors contributing to the high risk of contracting HIV.
Poverty may push persons with physical disabilities, especially females into sexual risk behaviours such as multiple sexual partners, forced sex, unprotected sexual intercourse, rape and sexual violence, to ensure survival, receive material and financial support in order to alleviate poverty . These behaviours are likely to increase the risk of HIV infection among persons with physical disability.
A high academic level has an influence on the risk of contracting HIV, by making sexuality education messages more meaningful . Persons with physical disability with high academic levels are more likely not to jeopardise their academic careers by unwanted pregnancies and sexually transmissible diseases (STDs), including HIV/AIDS, by abstaining from sex, being faithful to one sexual partner or by using condoms with multiple partners. Information on sexual risk behaviours is important in designing and monitoring intervention programmes aimed at reducing the risk of contracting HIV among persons with physical disability. The perceived low levels of education as experienced by persons with physical disability in Cameroon is a major barrier to accessing and assimilating sexuality education messages. Inaccessibility to this information might lead physically disabled persons into sexual risk behaviours which will in turn expose them to the risk of contracting HIV.
Persons with disabilities are often neglected in HIV policy planning as well as wider healthcare provisioning. Common misperceptions affecting public health planning include the belief that people with disabilities are sexually inactive or unlikely to use drugs or alcohol.
Persons with disabilities experience all of the risk factors associated with acquiring HIV. They are often at an increased risk because of poverty, severely limited access to education and health care, and a lack of information and resources to facilitate safer sex. Often, they lack legal protection and are vulnerable to substance abuse and stigma. Persons with disabilities, particularly women and girls, are more vulnerable to sexual violence and abuse.
Persons with disabilities are more likely to be excluded from sex education programmes than other people. Knowledge about HIV among people with disabilities is generally low, due in part to difficulties in accessing any kind of HIV education or prevention services. Information materials and approaches to disseminating information are rarely adapted to the diverse needs of persons with disabilities. The lack of appropriate information is thought to limit the ability of persons with disabilities to access and understand safer sex messages or to negotiate safer sexual behaviours. Persons with physical disability are less likely to have access to information and services, since it is assumed that they are not sexually active. They are, therefore, less likely to have the skills and means to protect themselves against HIV infection
HIV programmes must be accessible and meet the needs of persons with disabilities. Persons with disabilities are often denied the opportunity to articulate their specific needs or be heard, owing to their marginalized position in society. Like many individuals, people with disabilities need and want access to HIV education, testing and treatment, as well as to broader sexual and reproductive health services. They should be fully included in national HIV responses. National strategic plans on HIV must include good practice on disability. HIV must also be included as an integral part of disability rights strategies, initiatives and programmes.
Since persons with disabilities are vulnerable to physical and sexual abuse in both community and residential settings, protection safeguards are particularly important. Mechanisms to detect and prevent physical and sexual abuse in both formal and informal support services are needed.
5. Strength and Limitations of the Present Study
Firstly, there is a chance of desirability bias, as participants may have responded to what they believe the interviewer wanted to hear and not an accurate representation of their opinions, perceptions and experiences. Nonetheless, being mindful of this, the first author is a specialist in HIV research and he was not bias in the way he asked questions to the participants.
Secondly, the use of purposive sample could be a limitation because the results of the study cannot be generalised to the larger population of persons with disability. Reaching people through Associations of persons with physical disability means that participants are likely to be members of the Associations and therefore more likely to be active in the community. The researcher attempted to organise interviews through local authorities with the aim of a more representative sample who may or may not be members of the disabled Associations. However, due to poor weather, timing, etc., all attempts failed. This again highlights the challenges in reaching the most vulnerable hard to reach population of persons with physical disability. Nonetheless, this qualitative assessment was able to provide context and information on a topic where limited data is available.
Persons with physical disability in this study perceive themselves to be at high risk of contracting HIV, and to be marginalized from the national campaign to prevent the spread of HIV/AIDS in Cameroon. They also experience barriers to accessing health information and services. These arose from service limitations, poverty, lack of mobility aides, inaccessible buildings, marginalization in the community, illiteracy and lack of education.
Persons with physical disability, particularly women, are more likely to be victims of rape, sexual abuse and domestic violence than their non-disabled peers. Women with disabilities are less likely to marry than their non-disabled peers but are more likely to have multiple sexual partners or to practice various forms of sexual risk behaviours. Any lack of access to HIV/AIDS information and services is a human rights issue for persons with physical disability.
In the light of the findings of this study, it is therefore recommended that in HIV/AIDS programmes there should be educational programmes targeted specifically at persons with physical disability, and organisations having such programmes should reach more disabled people with updated information about HIV/AIDS. Moreover, policy frameworks should be more focused to guide and increase the access of the physically disabled to HIV/AIDS information and control services.
Since persons with physical disability vulnerable to risky sexual behaviours because of poverty, it is recommended that municipalities should support financially, groups of physically disabled so they can engage in some income generating activities. It is also recommended that NGOs and other development partners working on HIV/AIDS in Cameroon should increase activities and funds to control HIV/AIDS.
Civil Society Organizations should update their HIV and AIDS policies, as well as strengthen implementation and monitoring mechanisms to ensure the disabled are reached. Initiating a specially designed programme on HIV/AIDS targeting young people with disabilities purposely to counsel, guide, advise and equip them with basic quality information and education regarding health care and HIV/AIDS. This is because not much awareness has previously been made to them.
The government must do everything to see that the physically disabled are economically empowered through small-scale businesses in order to take care of themselves because poverty is the main factor contributing to the high risk of contracting HIV among the physically disabled. The government may also consider subsidy for commodities with respect to persons with disabilities.
EET conceptualised the study, designed the research instrument, interpreted the data and wrote the manuscript; PML critically reviewed the manuscript; both authors approved the final manuscript.